helen.t

thanks diamondcut for your advice! i really appreciate it! you look as if you got most of the same illnesses as me. are you able to work? i struggled to work for many years while being ill and fighting it all the time until finally my body just couldnt seem to recover. that was when i finally got some proper answers as to what was wrong. i live in glasgow but i travelled to london to doctors there who have helped me although not enough to get me back working- i wish!.. thanks again...

hi there, i've not posted in a while but i'm hoping that there might be someone from the UK who has POTS and being affected by the benefit changes that are happening here. I have received a form to fill in regarding my incapacity benefit and i am worried that it might be withdrawn. I am severey affected with POTS and other numerous health issues but i am anxious that my ilness won't be regarded as bad enough to continue to be in receipt of the benefit. I would find it impossible to work-- I had to give up 8 years ago. Is there anyone in a simiar position and how did you get on? helen

Hi Janey, I know exactly what you mean. I suffer terrible migraine and is affected by food and gut problems. When my stomach not happy it affects everything especially the migraine. Migraine is a very complex condition. Our digestive systems are linked as well as a host of other triggers such as hormones, blood circulation, food, heat ,cold, the weather, light. noise just to name a few. I had a couple of excellent booklets on migraine but I must have given them out. If you look up migraine on the internet you will get some really helpful information. your doctor should be helping you too to get referred to someone who specialises in migraine to help you find your triggers and to get the best treatment. My guess is that when we are suffering from constipation or back up, the digestive system pulls more blood which is worse for a potsy person. This will intensify your neck shoulder pain which will spasm due to lack of circulation in the muscles. I hope Ive made sense to you and it helps. Helen

Hi there, I'm so sorry that this has happened to you. I just wanted you to know that I'm thinking of you in this terrible pedicament.I have no wise words or great advice to offer you but I felt so sad for you when I read your post. Is there some way you can appeal the decision? Helen

Hi there, I completely identify with how you're feeling as well as everyone else here on the forum. It will be the end or likely the end of your previous life as you've known it to be and it is only natural for you to feel grief. However it is important not to let it drag you down into depression as that will only compound your illness and make you a hundred times worse than you are now. The best way I got round this was by taking good advice from a counselor friend who told me to focus on the small things that I coulddo rather than dwell on the things I can't[/i] do any longer. This was really helpful to me as it opened up new doors for me and my life has went a diffrent path to the one I was expecting. My life has also been enriched by the new people I have met because of this illness- by their kindness- and also I have been able to support and identify with other people who are and have been struggling with chronic ill health. This has given me a great sense of purpose as in this day and age when so many people out there are usually too busy and stressed to have time to listen to those in need. I struggled for many many years with no understanding or proper diagnosis of what was wrong with me and in between it all I had 3 children and various part-time jobs. It was really hard to keep going and I was continually having to keep crawling back up after long months of illness. Now I am helping look after my little grandson with my husbands help which I never thought I would be able to do. I find it really hard but rewarding and not sure how it'l go as he gets on his feet but I just take one day at a time!.... It is really hard when you are young and ambitious but don't let you're illness stand in the way of your ambition. You may have to tailor it realistically to your needs and there may be a different plan for your life but there will be a plan! I do hope and pray that you will make the most of what and who you are because you are worth it and will have a lot to give!! Hugs from Helen

Pat, I dont think thats coathanger pain that you have. Coathanger pain affects you across your shoulders ,up your neck and into your head. I have had that pain too that your describing and it was made worse one time when I was given Fluoxetine. I ended up in hospital very ill indeed and they all thought I was having a heart attack/stroke as my heart rate and BP was completly going crazy but they continued to give me the drug that was making me ill as they didn't have clue what was wrong with me and added others as well! They then thought it was a virus affecting my heart muscles which was causing inflamation to the arteries. I do believe it was inflamation affecting the blood vessels and I still get it from time to time but pain killers and anti inflamatory have helped me greatly, although I take these for different reasons. I still get spasms now and again but I am way better now than I was. Not sure why this is, Maybe to do with different meds I'm on. It may be worth your while mentioning it to your Doctor just in case you need it checked out. Hope you get on ok, Helen

Yes I get this too and have had it for a long time especially with sitting up in the one place. I agree with Flops advice about lying down but if you are in a situation which makes this difficult I try to move around a bit. Stretch my arms out front of me then slowly above, move my shoulders gently up and down and around very slow, I then massage the painful area with opposite hand to try to release tension and encourage blood flow and try to do all that together. I also flex my feet up and down so that the calves of my legs are helping to pump the blood round my body and up to my head better. I try to do it as inconspicuous as I can but it does make me look very figity I suppose. but it makes it more bearable to cope so I don't really bother about what others think. I usually do the moving thing before it gets too agonising as it works better although you have to keep doing it now and again. Even just being able to get up and walk around helps a little but I usually still have to give a good massage. Hope this is of help to you. Helen

Hi again Janey, OOps sorry but I did mean to say it is a good idea to take joggies and loose t-shirts to wear during the day.Also a pair of shoe like slippers or light canvas shoes come in handy for the tests. There is an exercise test and a meal test done with the tilt table on other days if theyre not cancelled in place of new ones to fit your needs. I think thats about it from me. All the best again, Helen PS Where are you un UK?

Hi Janey, I too have seen Prof Mathias and have been in UCLH Queens Square 3 times over the past 3 years for Autonomic testing. I have severe POTS, Coeliac disease, balance impairment and migraine related vertigo- which means that even when I don't have migraine pain I am still having migraine- I know it's wierd!! I suppose that accounted for the acuteness of my illness. I now have extremely bad tailbone pain and inflamation in lower back/spine and muscles, but on the whole I have been doing a lot better the last few months with meds from Queens Square and from my GP. Anyway to get to the tests.... They usually run the basic Autonomic TT test with a few things like putting your hand on ice; deep beathing exercise; blowing into a tube and other things to see how your HR and BP react. Then you get a 24hr BP monitor on and given things to do throughout the next 24hrs. Prof. Mathias usually comes to visit you with all his team in tow when you're in the middle of your lunch on the tuesday! He is a lovely man however and will put you at ease. he then decides if he wants you to see other Consultants or arranges different tests to the ones which you were expecting to get. That happened to me on a few occasions, so be prepared for things to change as the ward staff often forget to tell you or they don't know till the last minute themselves. Some tests may require fasting but I didn't have any invasive ones apart from blood tests. I did get some extensive tests at Neuro-Otology which were not very pleasant but which proved to be worthwhile for me in getting new treatment which has helped some of my problems. Prof does not leave any stone unturned in trying to help even though you will only see him for about 5 mins!!.. Good luck Janey, You are in my prayers, Helen

hi Tilly, I live in Glasgow and can relate to all you are going through. It took many years for me to get diagnosed properly too and when I was attending a Cardiologist, he also said that what I had was very unusual, had never seen anyone like me. He then became quite excited when he did his own research and eventually diagnosed POTS. The only trouble was he didn't know how best to treat me and I ended up in hospital with suspected heart attack/stroke symptoms. I was very ill but it turned out that the medication he gave me was making me worse but even the hospital docs didn't realise that. I was eventually referred to see Prof. Matthias In London as well and my in patient visits to Queens Square have been very worthwhile as I have slowly made some improvement of my symptoms with help from medication prescibed by him. He is a lovely man and shows so much interest in your condition and does his best to help you get a better quality of life. I do hope you get some help and understanding. This forum has been a Godsend to me and gave me the courage to seek out the treatment that I needed otherwise I don't know where I would be. Whereabouts in Scotland do you live? Let me know if I can help you further, Helen

Hi There, I too get a lot of pain when I'm static too long and have real difficulties moving at first. I presume it is due to the lack of regular blood flow round the body which seems to be a big problem for me and prob a lot of people with Dysautonomia. I waken very frequently during the night so I can turn myself or move a bit to relieve the intensity of the pain. Could you maybe set some alarm clocks to wake you at frequent times throughout the night so that you can move a bit? A recliner would be no use to me as I have excrutiating tailbone pain and have a problem sitting in that position but it might help you. I do hope you find a way of helping you cope with this. Good Luck Helen

Hi Folks, I have plucked up courage to go abroad to Spain for a short holiday for the 1st time since being diagnosed with POTS and various other health probs a few years back. I have been keeping a bit better recently with the various drugs i am on to help me with this condition. It is not too long a flight from the UK where I live and I have been able to cope ok with flights inside the UK so I am confident that I will be fine. My question is about travel insurance and whether anyone has experienced difficulty getting this while having POTS since as soon as you mention tachycardia to an insurance company, the cost of it sky rockets? I just wondered if anyone in UK had any experiences themselves about this? Thanks Helen

Hi, My heart goes out to you as you are being so brave even contemplating doing something that you know will make you feel worse. It is impossible for other people who have not experienced your illness to comprehend what you are going through and I know how horrible that crushing chest pain is when you you are trying to cope under stress. I think that cognitive therapy is a good place to start if you are constantly putting yourself down and having to listen to others who THINK they know whats best for you. I would probably avoid telling anyone that you are going down this road as sometimes they can get the wrong idea about what Cog. Ther. is, and be more convinced that your illness is all in the mind. What this therapy will do is help you see your illness in a diffrent light and help you find ways of coping with it under stressful situations. I also agree with another post that maybe some other medication may help. It would be worthwhile talking to your Dr about how you feel. Emotional stress can be extremely draining and sometimes even worse than physical. It is really important that you get the help and support you need. I hope and pray that that you will get this very soon. Take care Helen

Hi there, I have also been thinking about a cruise because it seemed that it would be a good way to travel but the thing is for me that I need to keep moving or my symptoms get worse. Walking is the only exercise i can do and I wonder if going on a cruise would restrict this. I'm not good in heat either and standing is impossible so if there was a lot of standing in line, waiting to get on or off the boat, I think I would find this really stressful. I also find that having to make conversation with people all the time extremely exhausting and wondered if that would be too much as well. It is good to hear that some of you have tried it and it has given me some hope but I'm still not too sure about it. My husband is keen to try it and I generally love boats and used to travel well in them but my health is quite different now so I don't know. I am sorry I can't be more positive but these are the things that I would be concerned about. Helen

Hi Everyone, Thanks for your replies which have been very interesting! I find it hard to know what is Pots related dizziness and the whole migraine/vertigo business. I have a falling over feeling almost all the time and have to be really slow at turning round or moving from one position to another. My eyes are affected badly too which means I can't go on computer for long. Does anybody else have that falling over feeling almost like your being pushed to the side? I also lose feeling down my left side and have great weakness and kind of almost lose consiousness/black-out, but not completely, for a minute or two, especially in certain positions. Is this all migraine related do you think or more a Dysautonomia/Pots thing? Thanks again, Helen

Hi Folks, I was diagnosed with having Migraine related Vertigo a few months back and told that even when I don't have pain of migraine I am still having one due to the Vertigo I get. Does anyone else have this or is it unusual? I have Pots and Vestibular Impairment as well. I just wondered whether it was a common feature of Pots as I know others are bothered with migraines but not heard of related vertigo associated with them. Thanks for any interest shown, I will be grateful for any reply's. Helen

Hi Folks, Yeah my ears are really sensitive too. I suffer from tinnitus which fluctuates in loudness and can be painful too. I find certain noise really painful and worse when having migraine. I also get a lot of pressure in my ears like they are being sucked in together which can be quite distressing. Does anyone else have this and know what would be the cause? I put cotton wool in my ears to help muffle loud noise. Helen

Hi, I can relate to all that dizziness too. It has been a major problem and hindrance to my health. i was dx with Benign Positional Vertigo a few years before POTS. Now dx with Vestibular Impairment and Migraine related vertigo. I tried the vest. rehab exercises last year and it made my chronic migraines intolerable and I was not able to function at all. I have been given Sodium Valproate to control the migraines so that I can have another go at the vest. rehab. exs again but I can't say I'm looking forward to them. Everyone is different though and I have heard they can be a good success. I know I will have to try them again to see how they go but at present I'm still getting migraine. The whole thing for me is so weird too because I have been told I have had POTS the majority of my life and migraine for a good part of it but the extreme constant dizziness only began after a neck injury with a tooth extraction. I also started to get all the ear problems etc too at that time. The whole thing about POTS is that the blood is pooling to the lower half of your body and I think in my case my veins are too elastic so it seems reasonable to me that it would affect the vestibular system. I hope you get on ok with the exercises! best of luck Helen What is a doppler test Ernie? It sounds like something I would like to get done.

Hi, I have that problem too and have had for as long as I can remember. I am 50yrs old so for a very long time. I don't think it's anything to worry about but then again I've never asked as I just thought everyone got it. I suffer from migraines and I have a lot of visual disturbance going on and have been told that even when I don't have pain of a migraine, I am still having migraine due to other symptoms that I get. They said I have been suffering probably since a child. Don't know if this relates in any way to your situation. Hope you get some answers! Helen

hi Just want to comment on Mary's post about pushing yourself. I'm afraid I don't really agree too much on this as when I did this, which was often, I became so ill that I could not function at all. Usually people with this disorder are people who want to push themselves anyway as they do not want to be ill and it's a case of learning how much your body can withstand before collapse. The trouble is sometimes you can push and get away with it and other times when you have too much going on at once, then it spells disaster. Sometimes people have collapse even when things are going well but I think the key is to get to know what helps your body, as we are all unique, and know when to rest and when to push. The advice I was given when I was dx with CFS was to do enough as you could do without getting tired and stop as soon as you did, have a break to recharge, then do a little more, repeating the same principal. It was the best advice for me and helped me achieve in the past more than I could do if I kept pushing all the way. Things are way different for me now as I'm profoundly disabled but I still hold to the same principal which helps me have a life of some sorts. Everyone's different of course, but that has been my experience. Hope all goes well for you, Helen

Hi, Do you see a Cardiologist? Maybe he could recommend the best Neurologist to see in your area and for your condition. Hope you get someone nearby. I have to travel 500 miles to see my specialist which is a nightmare but I know he is the best there is in the UK as far as I know. Helen

good Luck in all you do!! The one piece of advice I'll give you is to pace yourself and not take on too much at once, especially when you are having a good spell, even if it takes longer for you to complete your course, your health comes 1st because without it life becomes so much harder. I say this because as soon as I had times of feeling good, I would take on more commitments and then have a major crash trying to keep up with them. You sound like you've had the same experience I had for 25yrs before I was dx properly but sometimes treatment for anxiety can help with some of the symptoms we have to cope with. As long as you know that they are helping you for a different reason and they help, who really cares. At the end of the day you just want to be as well as you can be so if doctors want to put a label on it, just let them. I did for a long , long time even when I knew they were not right, but it gave me peace when I didn't stress out about it and went along with it and tried out different things. When they don't work, they have to pay more attention to what is actually wrong with you. All the best for your studies, Helen

Yeah, I get them too and was admitted to hospital but couldn't find any explanation for them. They put it down to stress and anxiety attacks which I knew was not right but had no choice until they realised I was having a drop inBP when standing up. My BP and heart rate would be through the roof and would just come on out of the blue. In fact they were so severe the hospital staff thought i was about to have a heart attack or stroke as I couldn't speak, going grey, and was numb almost all over and kept me under constant observation. I would get them a lot during the night when I woke to go to the toilet and didn't feel in the least anxious. I am more prone to them when I'm ill with flu or other illnees, dehydrated, doing too much, under stress, changes in diet/medication, eating high carbohydrate foods, alcohol. They are extremely frightening but I've learned not to add to the attack by realising it will pass and by deep breathing. An anti-histamine would help control them a bit for me but I get Diazepam now which calms them down. I've not had too severe an attack for a while now, I think the Midodrine I get helps with this. I think it is a symtom of Dysautonomia when your body has such a major reaction to even small changes whether they are environmental or biological in nature. The fact that I have not had a heart attack and my heart has been checked out tells me that it is very strong and will cope even though they are very scary and distressing when they happen. Drinking lots of fluids and high salt diet is good and get some medication to take which will calm them down, then you will cope better. God Bless, Helen

The Neurologist I see here in the UK specialises in Neuro-Vascular medicine and Autonomic Dysfunction. I also see a specialist in Neuro-Otology but she doesn't know anything about POTS even though it was my POTS Cons. who referred me to her regarding my balance probs. That seems to be a seperate issue as far as the POTS is concerned. Helen

Hi Everyone, Thanks so much for all your advice which I took and called my Cons. Cardio doc last Thursday. He was off but his secretary said she would find out this week for me. I got a call back today to tell me not to take the Midodrine the day before as well as the day of the Angio Test. Just as well I looked into it more and didn't follow the instructions of radiology!! I had a gut feeling about it so thanks again for helping me decide what was best! I am so grateful!... My test is on Friday so I'll let you know how I get on. It will likely be all POTS related, thats what I'm expecting although I do have high cholesterol. Anyway, I'll be in touch soon. Helen